Update of Results from all our Fantastic Trips!

#2 For those of you who have just joined, Shane, Sierra and I moved back to Australia from England for a steady income and so we could have help from our family in February 2008 and have since done 4 trips back to the UK and Europe to get the best possible care for Sierra. While care in Australia exists it does not compare with what is offerred OS.

Trip 2 July 2008: we went over to Europe again. This time for Physiotherapy with Anel in the UK's Bobath Centre, to spend 3 days with Tereza in the Czech Republic for Hippotherapy and Vojta Physiotherapy, to see Dr. Zivny for Botox and Dr. Anna Zobonova for an eye appointment - both in Prague, then go to Cologne in Germany to meet Dr. Angy Etou to discuss the possible use of Stem Cells at the XCell-Centre.

We now refer to this trip as "The Vomit Trip". Sierra had very bad reflux anyway and when she was unwell this accentuated the vomiting. She wasn't really well enough to travel this time but it was then or in another 6 months. For a child like Sierra, every day counts between 0 - 3years of age. We couldn't wait. We just did the best we could to keep her as well as we could but she vomited everywhere we went!! It was awful. To this day I look back at how challenging this trip was but then I remember, if we hadn't gone, Sierra would not have vision!!

Benefits: Bobath: We started in the UK with Anel at The Bobath Centre where as planned she gave us a good 6 month physiotherapy home program.Tereza: When Sierra was on the the horse for the Hippotherpay it was determined that she didn't need Botox after all. It took Tereza a lot to convince me. I thought the Botox was one of the main reasons we had come to Europe - it's not offerred in the same way in Australia. I was afraid about leaving for 6 months and finding we had chosen incorrectly.
Tereza also gave us some corrections to the Vojta physiotherapy which was usual but what wasn't usual was Tereza's style. She had been influenced since our previous visit to do a more gentle style of Vojta which is commonly known to be tough and demanding of children, making them cry. This shift in style has been one of the main reasons we have been able to continue the Vojta as time goes on. Only 30% of parents contiue with Vojta therapy despite it's outstanding results, due mainly to the baby's crying.

The BIG SURPRISE of this trip was the eye appointment: Sierra's eyes had started to really improve from the use of the glasses so Dr. Zobonova suggested we move to using contact lenses. Shane and I were so shocked. "Contact lenses on a baby!!!" We trust this doctor immensly and the glasses were clearly working so we thought we'd try the contacts. Apparently the contact lenses work a LOT better than the glasses because the child can wear them all the time including throughout therapy when you need the child to be motivated the most.

Dr. Angy Etou: The XCell-Centre Stem Cell clinic was clean and modern. Angy was surprisingly direct about the lack of case studies for children like Sierra but thought we had about 60% chance of having some result and 40% of no result but NO CHANCE of going backwards. Shane's parents were with us and we all thought it worth giving a try so planned it for December 2008.

At the end of this trip we were all exhausted but we had made progress especially with Sierra's vision. Before glasses Sierra had next to no ability to focus. Vision is the most important thing for a child with a severe disability because unless they can see there is little motivation to move. Now we had proof that her vision was improving from using a +3 lens and we were leaving with a 6 month supply of +3 contact lenses.

We also had the commitment to come back in December to try Stem Cell...

Update of Results from all our Fantastic Trips!

#1 For those of you who have just joined, Shane, Sierra and I moved back to Australia from England for a steady income and so we could have help from our family in February 2008 and have since done 4 trips back to the UK and Europe to get the best possible care for Sierra. While care in Australia exists it does not compare with what is offerred OS.

Trip 1 March 08: We picked up her disability chair, saw the physiotherapists Anel and Teresa for additional guidance on how to keep Sierra progressing, got input from Dr. Zivny about her overall condition and a prognosis and visited Dr. Zobanova for an Eye Appointment.
Benefits: The chair has been confirmed by the disability chair providers in Australia to be the best make in the world and it has been a saviour for us. Sierra can not sit unaided and needed something sophisticated to enable her to be able to do basic things like bring her arms forward and play. You can see her enthusiasm from the photos taken when we first arrived back - she had never been enabled to do this kind of play before without expert handling from physiotherapists. Even Shane and I could not hold her body in such a way that she could bring both arms forward to play because of her difficulty in holding her trunk and head.
The glasses took Sierra from having virtually no ability to focus to some ability to focus. The idea is that by using a +3 lens you entice the brain to learn to focus. This sometimes works and sometimes doesn't but with Sierra it did! Physiotherapy is the backbone of everything. Both Anel and Teresa know Sierra well and gave us guidance on how to continue for the next few months. The physiotherapists we have in OZ do the same style so each compliments the other.

A New Level of Development

Shane and I have observed that Sierra is making better sounds, more interesting sounds. While in Prague the doctor WITHOUT hearing what results we were seeing from the Stem Cell said that the next things for us to focus more on is getting Sierra to grab things. He said when a child starts grabbing they also start saying some words. He said this is a level of development that a child reaches. The two go together. It's amazing because I could not work out why I was only seeing results in Sierra's hands and tongue/ mouth, it seemed so unrelated.

Tricky Fingers

The latest on Sierra's results are...since this second stem cell treatment we have seen a further reduction in tone in her upper body. I'm noticing she is moving her fingers independently for the first time and reaching out with open hands to clasp my arm or my hand. It's SO cute to feel her little hand gripping my arm and squeezing me.

Tiffany, Dave and Zannah

When I put my film on facebook I was not sure what I was going to do about another fundraiser and was using the film as a starting point. I didn't have much hope of getting people's support because I find it VERY difficult asking people for moeny.

Within 24 hours I received a call from Tiff and Dave. "We are in Melbourne can we come over and look at Shane's paintings? We want to buy one as a donation to your fundraiser."

I was so surprised. However, this is what gave me the confidence to continue with this fundraiser.

Unfortunately the painting was too big to transport from Melbourne to Sydney so they have donated regardless. Thanks guys!!

The running total is now: $16,415

Mystery Man

I met a man on an aeroplane named Arthur Spanos, who later donated $2000.

Thank you Arthur for your extraordinary generosity!

Stay tuned to hear more about the results Sierra receives.

Make May Your Mat Hire Month Too

Thank You Milli from Bikram, Yoga Tree and for the donation of $193.

Thank you Samantha from Bikram Yoga Brisbane for the donation of $565.

Both these schools participated in the Make May Your Mat Hire Month. Every bit REALLY helps and we are very thankful for your participation.

The running total is: $14,215